The PHA community is a network of people with diverse backgrounds and experiences living their best lives. PHA highlights those experiences through inspiring first-person stories in our Right Heart Blog.
As the moderator of a PHA Facebook group, Janessa Curnow, 38, receives requests to join the group from people all over the world. For World Pulmonary Hypertension Day on May 5, Curnow shares what she’s learned from the international PH community. Curnow leads the PHA Young Adult Support Group and previously led the PHA Grand Rapids Support Group in Michigan.
Carole Doody's passion, playing the bagpipes, saved her life. When she no longer could play the right tones or march, Doody knew something was wrong. Fifteen years after her PH diagnosis, the retired speech-language pathologist volunteers for PHA. She shares her story in honor of National Volunteer Week, which wraps up April 26.
Lauri Stanfield of Tomball, Texas, received the gift of life in 2015 through a double lung transplant – and gave life by donating parts of her lungs for research. Stanfield, who works in the oil industry, likes to try new things and is weighing whether to learn pickle ball.
Over the past 24 years, Sophia Esteves of San Antonio has found strength and community through the Pulmonary Hypertension Association. Last year, PHA named Esteves its 2024 Outstanding Support Group Leader. Esteves shares her story as the face of PHA’s spring fundraising campaign and in the upcoming issue of Pathlight magazine.
Jaylin Binkley, a first-year student at Indiana University-South Bend, is majoring in radiography and exercise science. The 19-year-old is on her college cheer team, participates in pageants and competes in 4-H, a youth program to learn about science, agriculture and civic engagement. She developed PH as a baby and relies on subcutaneous treprostinil.
Four years ago, Teresa Bailey underwent an echocardiogram for a chronic cough. During the procedure, the sonographer asked who was treating Bailey’s PH. Bailey had never heard of pulmonary hypertension, nor knew that doctors suspected it during a previous thyroidectomy. Since then, Bailey has received a definitive diagnosis and is improving with treatment and pulmonary rehab. She shares how she’s making up for lost time in PHA’s Right Heart Blog.
PHA peer mentor Tina Kondos has lived in the Phoenix area since 2018, but holds a special place in her heart for the Midwest, where she was born and raised.
Casey Perez was diagnosed with pulmonary arterial hypertension three months after her wedding in 2018. The 32-year-old lives in Bradenton, Florida, with her husband and works as a marketer. “I turned to PHA’s invaluable resources on how to live better with PH,” she wrote in PHA’s most recent annual report.
Health care professionals struggle every day to ensure patients get the right drugs. They know what’s working and what’s not. Yet insurance companies decide whether patients receive their prescribed medications. “We need a better way to ensure our patients get what they need when they need it,” says Donnielle Turner, a registered nurse at Houston Methodist.
